Using medications to treat breathlessness in advanced long-term conditions

Who is this document for and what is it about?

This document explains the recommendations from a practice review that was published by the EU-funded BETTER-B- project on using medications to treat breathlessness in advanced long-term conditions. It is for people who experience breathlessness, or their family or their carers.

What is a practice review?

A practice review is produced after a scientific process to gather evidence on a condition or symptom. Practice reviews are written for healthcare professionals to understand the latest evidence on a particular treatment or diagnostic process. They also make recommendations to help professionals when they have to decide upon a treatment or a diagnostic procedure. Practice reviews usually follow a more simplified development process than a clinical guideline. However, practice reviews still have a high-quality standard. They give an overview at a glance of what to do and what not to do.

What does this document include?
This document summarises the key points from the practice review on using medications to treat breathlessness. The recommendations in the review are divided into:

Recommendation for, where there is strong evidence to support a treatment or approach

Recommendation against, where there is good evidence against a treatment or approach

Unknown, where there is a lack of evidence to date or conflicting evidence, to signpost to further research areas.

This document explains the recommendations in a way that is easier to understand for people who do not work in a medical field.

Breathlessness is the feeling of being out of breath as your lungs work harder to draw in more oxygen. It is often a symptom of a long-term condition, such as chronic obstructive pulmonary disease (COPD) or interstitial lung disease (ILD).

Persistent breathlessness is when it continues over weeks or months, despite treatment of the condition that is causing the breathlessness. It is a frightening symptom that leads to distress for patients, families, and carers. Research has also shown it is often neglected or under-treated.

This review aimed to provide recommendations to healthcare professionals on the best ways to manage breathlessness. It looks at possible medications that could be used, alongside other options.

As a general approach, breathlessness should be treated in the following stages:

Treating the underlying condition

Existing clinical guidelines suggest that treating the condition that is causing breathlessness should be the first step to managing the symptom. This could include the treatment of long-term conditions, such as cancer, COPD, interstitial lung disease (ILD), and chronic heart failure (CHF). It could also include short-term conditions, such as infections (like pneumonia), pleural effusion or anaemia.

Breathlessness is known as a symptom of these conditions, which means it is happening because of that condition. It can be affected by several factors, including anxiety and depression.

An in-depth review of an individual’s condition and symptoms should be carried out. This can help decide which treatment options are best and which factors can be managed to help improve breathlessness.

Treatment that does not involve medication

There are many ways to manage breathlessness that do not involve medication. Several existing guidelines cover these. These guidelines suggest various things that could help, including:

• Using a hand-held fan to cool down the face and body
• Breathing techniques to help slow and control breathing
• Sitting or lying in different positions to try and ease fast breathing
• Practicing calming techniques, such as mindfulness

These practices can help manage breathlessness at home, helping to reassure someone who is living with it, and the person who is caring for them. They also have a low risk of any side effects and can be easily used, after some training, for most people.

You can find out more about the guidelines that recommend these practices at the following links:

• Management of dyspnoea in advanced cancer: ASCO guideline
• Management of breathlessness in patients with cancer: ESMO Clinical Practice Guidelines
• Management of symptoms in adults with serious respiratory illness 

You can also read our managing breathlessness at home section or visit Managing breathlessness in advanced illness | Feature from King’s College London (kcl.ac.uk)

Different strategies should be tried and monitored to see whether they improve a person’s symptom of breathlessness. If they do not, a healthcare professional can check if any additional training is needed and/or consider combining different measures to get better relief.

Medications for people with severe disease

There is limited evidence showing that medication can effectively treat breathlessness. Medications should only be offered if the above two steps have not helped to relieve breathlessness.

Using medication should be reserved for people who are in the advanced stages of their condition, and coming to the end of their life, or those who have severe breathlessness causing extreme distress.

The benefit of medication should be carefully considered against any possible side effects. It should also be considered the last option to relieve breathlessness.

Medication should not be used to treat short episodes of breathlessness. This is because it takes several minutes for the medication to start working, and by then the breathlessness episode has usually passed.

The following medications were looked at as part of this review:

Opioids

Opioids are drugs that are used mainly for pain relief. They include morphine, tramadol, fentanyl, methadone, diamorphine and alfentanil. They are usually given for a short time to treat severe pain, such as after surgery or at the end of life. There are a limited number of studies that look at how well this medication works for breathlessness, therefore the evidence is classed as ‘low quality.’

Specific recommendations include:

Regular small amounts of opioids (low-dose) could be used to treat people living with COPD, cancer or ILD, with severe breathlessness that is causing distress.

Do not routinely use high doses of opioids for people with COPD. A high dose is considered more than 30mg in 24 hours. This is because higher doses have been linked to a higher risk of side effects.

The review was not able to say whether opioids could be used to treat breathlessness in people with chronic heart failure as there was limited evidence.

Opioids that release the medication at a slower rate, known as modified-release or slow-release opioids, should be used for people with breathlessness that is under control.

A lower dose of opioids, or longer time between taking the medication, is suggested for people who have kidney failure. This is because the kidneys have an important role to play in absorbing medication.

One of the most common side-effects of opioids is constipation. This is when you are not passing stools regularly or you are unable to completely empty your bowel. If a person is using opioids, they should also consider starting laxatives – a medication to help a person go to the toilet more regularly.

Another common side-effect is feeling or being sick. Healthcare professionals should anticipate this before starting opioids and consider the best treatment for sickness and have a plan in place to deal with this.

Opioids can have other dangerous side-effects. This includes addiction to the medication and failure of the breathing system, known as respiratory failure. Healthcare professionals must carefully monitor and check for these side effects while opioids are being used.

Benzodiazepines

Benzodiazepines are drugs that are used as a sedative or to reduce anxiety.  This means that they work to slow down a person’s brain and body. They are usually given to help people who experience anxiety or who are unable to sleep.

Benzodiazepines should only be used if breathlessness is causing severe anxiety or panic. Benzodiazepines are considered effective at treating anxiety and panic. Therefore, they can be used for people who report anxiety or panic as the main symptoms linked to their breathlessness. This should only be when it cannot be improved by non-medication methods and after carefully weighing up the benefit and harm.

The evidence for this group of medication was limited. Therefore, the use of benzodiazepines should be carefully monitored to spot any potential side effects and ensure they do not harm a person.

The use of opioids and benzodiazepines together should only be considered in the last days of life when severe breathlessness cannot be managed otherwise. The use of these drugs together can increase the risk of side effects so it should otherwise be avoided.

Do not use high doses of benzodiazepines and avoid long-term use unless there is clear evidence that it is benefitting an individual. This is because higher doses have been linked to a higher risk of dying. A higher dose is considered more than 1mg in 24 hours.

Corticosteroids

Corticosteroids, sometimes known as steroids, are used to treat inflammation in the body. They are used for a range of conditions, including asthma, COPD and allergies. They include prednisolone, beclomethasone, fluticasone and methylprednisolone.

Steroids should not be used to treat long-term breathlessness unless there is clear evidence that it is benefiting an individual. There is because there is limited evidence and some evidence of severe side effects.

Antidepressants

Antidepressants are used to treat depression, or other illnesses such as obsessive-compulsive disorder or post-traumatic stress disorder.

Antidepressants should not routinely be used to relieve long-term breathlessness.

This document was produced by the European Lung Foundation. It is based on a practice review, published in the Palliative Medicine and written by members of the EU-funded BETTER-B project.

Full practice review

Further resources for patients and carers:

Managing breathlessness at home

Managing breathlessness in advanced illness | Feature from King’s College London (kcl.ac.uk)

About BETTER-B

The BETTER-B programme aims to significantly improve the treatment of severe breathlessness in patients with advanced disease by establishing whether mirtazapine, currently used as an antidepressant, is an effective treatment to reduce severe breathlessness even when people are not depressed.

Currently around 15 million people in Europe are affected by breathlessness, an experience that is often described as traumatizing for the patients and those close to them. New treatments for breathlessness are urgently needed as there is currently no licensed drug for the management of chronic breathlessness and the symptom can persist even when the underlying condition is optimally treated.

The project delivers a step change in the evidence-based management of breathlessness in palliative and end of life care, with wide-reaching impacts on patients and European societies.

Further information on the programme 

Read a press release on findings from the Better-B project